January 3, 2026

January 3rd…we were supposed to be on a plane this morning to check off another bucket list item forTate…a weeks cruise. I can’t begin to list the planning that has gone into this with all the medical, but despite the best efforts by many, medical won…for now.

But the disappointment really isnt about the trip. It’s about lack of health despite all the things. It’s about a disease process that continues to cause pain and sickness and is truly a thief. A trip represents a reprieve from the daily yuck. Something to work towards. Something to fight for. To work for the daily normal that most take for granted feels impossible. To work for a week of different with the medical mixed in feels more attainable …until it’s not.

Today was worse for Tate. We have now added the concern of a recurrence of a gut infection. This is what we were dealing with for the October admission where we were so close to losing Tate at home. The combination with adrenal insufficiency is a tough one.

A two hour telehealth with Tate’s rheumatologist yesterday is bringing movement. X rays, brain mri, LP, additional immunosuppressant med, neuro appointment next week and more labs. It’ll take a bit to work through all this, but a plan always feels better.

4 years ago today Tate was in the ICU working towards bone marrow transplant.

3 years ago (the beach picture) we had landed in FL for Keira’s brain tumor surgery. She’s less than 24 hours from going into acute hydrocephalus and being in the neuro ICU and brain surgery that brought with it so much heartache, loss and on going recovery. But kept our girl here with us.

2 years ago Tate had just been discharged from the hospital, back on TPN (IV nutrition.)

1 year ago we were days from an admission for a blood infection. Just a few weeks later, Tate would be hospitalized for 3 months leaving with further disease progression which continues.

Today… we’re home. Keira has made tremendous strides and in this moment, we’re home with both girls plus our sweet Drew, and TJ in WI doing well. Perspective and gratitude. We’ve had more difficult weeks with greater disappointment than where we’re sitting today. We’ll have worse days ahead and better ones too. It’s not about a vacation but what the disappointment represents. So many years of struggle. SO MUCH medical. A craving for simple and easy.

As I prayed for my Tim this morning after he left to go visit a sweet member who days are very limited, far too early in what we expect as a long life, my perspective shifts. To give God thanks for life. For the tiny joys, the love of family and friends and because of Jesus, hope that the best is always yet to come.